Posts Tagged ‘autism’

Archie has always liked looking through video cameras and digital cameras. He’s always liked watching himself on videos. But he’s never made the link between someone pointing a camera at him and then taking a photo. So he’s never posed. Not once. Never in eleven years.

Today he discovered Photo Booth on our new iMac. He quickly worked out that it captures a ‘moment’ so to speak (maybe because it does a countdown that flashes up?) and he started posing. We have pencils in mouth, shoes, him jumping and waving, his favourite postcard. 15 photos of his favourite postcard. I’ll put one below now:

Only yesterday I was trying to get a photo of him at surfing where he posed with the instructors – no chance. We had lots of lovely shots, but no posed ones. Today he pulled funny faces. He even said ‘neee’ (cheese) with a grimace. His brother’s were grabbed. I have my first ever photo of all three of them posing.

355 photos later I made him stop. But wow. It feels like a big leap forward in understanding.

I’ve written quite a bit on here about Horse Boy Camps. Unfortunately the links on those posts are now a bit out of date as the camps are no longer being run by Worldwide and so contact details for these camps have now changed. There’s a new website and Facebook group. Your first choice of contact in the UK is probably Gillian Naysmith. They’re in the process of setting up several permanent sites in the UK and are also now running training camps.

Rupert Isaacson is still overseeing the camps and Karen Thursfield is still a camp leader in the UK so although there will be changes the concept of the camps shouldn’t have changed that much. I have noticed that the age limit has changed. Previously there was no age limit; in fact an adult attended our camp, but the camps are now only open to children aged 2-12. This seems a shame and a rather arbitrary limit (what is it with autism and animals? No service dogs for the over 11’s, no horse boy holidays for the over 12’s). I promised Joseph one of Archie’s brothers after the camp this year that he would be able to go on ‘the best holiday ever’ again next year. It seems as if it might be the last year given that Archie will be turning 12 next year. The majority of children on our camp were the same sort of age as Archie and it worked pretty well so I’m a little surprised by that change.

I will keep an eye open for similar ideas suitable for older children and will of course post anything I find on here.

We’re quite lucky in that Archie was relatively easy to toilet train. My Mum made it her goal when he was 4 or 5. Joseph was about 2 at the time and I was pregnant with Louis so I was happy to hand that job over. It took quite a long time – we had to try and keep him on the toilet until something happened so it was a bit hit and miss but we got there in the end.

We were fortunate that Archie had enough control over his muscles and enough understanding that toilet training was achievable, but it fairly often isn’t for children with severe autism or learning disabilities. In this case the PCT should provide incontinence products. Many PCT’s have imposed arbitrary limits on the number of nappies allowed each day leaving families short . You generally can’t just pop down to your local supermarket for larger nappies and they’re very expensive.

This problem was brought to David Cameron’s attention by during a pre-election chat on Mumsnet where he promised to look into the issue. Meanwhile Mumsnet joined forces with Every Disabled Child Matters to launch a campaign calling for an abolition to ceiling limits on nappies set by PCT’s.

Mid August there was some success. The Secretary of State for Health wrote to the Chief Executive of the NHS asking him to tell PCT’s that: ‘Pads (nappies) should be provided in quantities appropriate to the individual’s continence needs. Arbitrary ceilings are inappropriate’.

Further details can be found on the Every Disabled Child Matters website.

I heard from a friend earlier this week that our PCT are still setting limits so I emailed the continence service yesterday asking them to confirm that they are aware of this guidance. I will post the response here when it’s received.

I’m still not entirely sure how we’re going to train him. Now he’s been born we need to start researching this. I spoke to the breeder tonight and in between playing the puppies a CD of fireworks, babies crying and hoovers she is going to play a CD of Archie shouting and screaming. She’s very dedicated- it will be quite an unpleasant CD. Of course the idea is to desensitise the pups.

After that I’m not sure. Basic training and socialisation to start of course. Followed perhaps by more specific retrieval training. A friend told me today about PAWS (Parent Autism WorkshopsAnd Support) run by Dogs for the Disabled where though a series of three workshops they teach you to get the most out of your family pet. To attend your child needs an autism diagnosis. I contacted them this morning and received a very quick reply with further information. I’ve decided to attend the training in Cornwall sometime in the Spring. Venue and dates to be confirmed. There are already confirmed dates and venues for workshops in Liverpool, Kenilworth, Wytham (near Oxford), Uxbridge and Evesham.

I’ve created a new category for the blog – Dog training- where I’ll try to provide regular information about our attempts to train Chewie. I don’t claim any expertise in this area. If you have any please get in contact!

About a year ago I registered for the Springwise weekly newsletter. It’s the one email newsletter that I read religiously. Cup of coffee in one hand, computer mouse in the other – it’s a moment of peace and quiet.

I was overjoyed in last week’s newsletter to see that someone has finally opened a mobile shoe shop. I have been suggesting this for years. If you’re in or near Berkhamsted (I’m not unfortunately) you’re in luck.

Shoe shopping was always hideous for us when Archie was younger. He would kick the staff when they tried to touch his feet and curl his toes in the measure making it impossible to find his size. We also had the issue of waiting. He’s actually fine now – the last set of shoes were fitted on a busy day and the only problem I had was preventing him from marching straight out of the shop when the fitter suggested he had a walk around.

Haircuts were similarly hideous when Archie was little and that problem was solved by school. They have a hairdresser visit every six weeks. We send him in with his £5 and he arrives home shorn. For many years I hoped they would make a similar arrangement with a shoe shop – alas no – but if you’re in anywhere near Hippity Hop Shoes your life might just have become easier.

My friend has started up a Facebook group; You know you’ve got a child with autism when…. . It’s proving very popular. I was the second person to join; when I next visited a few days later it had over five thousand members. It a good way to spend five minutes with a cup of coffee and I am always amused at how familiar so many of the stories are.

We had a ‘you know you’ve got a child with autism’ moment today. Ever the optimist I popped out shopping this morning to get waterproof trousers for everyone for our upcoming Horse Boy Camp – I am hoping that spending money on waterproofs means we’ll have a mini heatwave at our camp. On arriving home I found Archie climbing the walls. It quickly became apparent that he wanted to go shopping. I was given plastic bags and various goods carrying various supermarket brands. Well, I say given; more like had them shoved at me. With some suggestion from my end this did narrow down from any supermarket to Sainsbury’s. I also noticed that in some cases he was showing me the word Sainsbury rather than the logo. Clever boy Archie.

Anyway we had to eat lunch first which led to much shouting. We’re still not that good at waiting. Then I was given string of instructions (via pointing and shouting ‘ah ah ha naiya ah’) about the route I had to take. I obliged and we arrived to find a couple of disabled parking spaces free (useful when I am on my own with Archie and trying to move a trolley and keep hold of him and move him if he decides to have a pavement sit in). I parked, jumped out, then…. nothing. Couldn’t get Archie out of the car. Lots of shouting but a genuine refusal to move. By now we were providing the entertainment for a few passers by. One couple even stayed in their car to have a good old gawp. I tried some bribery ‘Sainsbury’s then swimming tomorrow’. Nope. Didn’t work. ‘Do you want Sainsbury’s or home’ (assuming that as he’d just spend the last hour trying to get out of home the decision would be easy’. His hand hit ‘home’. Oh right. Sudden inspiration. ‘Sainsbury’s or Tesco?’. TESCO! TESCO TESCO TESCO. A very clear choice. To be fair the first plastic bag I had had shoved at me had been a Tesco bag, I’d suggested Sainsbury’s.

Tesco won that particular battle and we managed to pick up a little trolley with just a small amount of shouting and some gentle attempts to knock me over.

Mencap runs the Snap! photography competition each year. It’s for photos by or about someone with a learning disability The theme this year is ‘being active’. I was going to enter the above photo – someone said it captures ‘Freedom and Isolation’, which sort of sums Archie up really, but I’ve overcropped it and it’s not a high enough resolution. Pity as charging off into empty spaces is one of his favourite activities. So we’re back to the drawing board.